Table 4 Risk

Unequipped to deal with long-term, complex nature of FM

Delayed acceptance of diagnosis

“It wasn’t until probably I was about 28, did I really start to be like, ok, this is obviously going to be with me for the rest of my life.”

Difficulty of teenage years

“As a teen, I thought my life was over.”

Dealing with depression and anxiety

“I have pretty bad anxiety. I struggled with depression throughout college.”

Fatigue symptoms need more attention

“The pain I can kind of mitigate, though I’m not the best at it, but the fatigue overrides everything.”

Long-term impact on life

“It is multifaceted. We do need to encourage our patients to – you know, they will have to change their entire lives.”

I wish I knew more when I was younger

“It wasn’t until college that anyone sat down and talked to me about pain management strategies.”

Inadequate support and stigma

Negative stigma associated with diagnosis

“I had to hide it.”

Burden on others

“Because I couldn’t do anything, I was dependent on everyone. There was so much pain, and I wasn’t able to keep myself distracted … I couldn’t even care for my son.”

Social isolation

“I got to a point where I got too exhausted to really have friends.

Poor parenting (poor mental health, overprotective parenting)

“My parents want to kind of put me in a bubble at this point in my life and not let me do anything. ‘You’re gonna hurt yourself.’”

Negative healthcare experiences

Dismissive providers

“I was tired of getting the look, like, ‘Oh, you sure?’”

Medication was not the only answer

“For basically all of high school, it was, ‘You have this disease, you’re going to be in pain pretty much every day for the rest of your life. … here’s some Cymbalta ..’ And that was not super helpful. Especially to a teenager who has so much else going on, too.”

Poor access to quality care

“My doctor didn’t really understand how to manage my condition, because he didn’t really understand it either.”